soreness on right side of head GCA

[Plains]

good morning from the US. Well, my saga continues to trying to find out if I have GCA or not. Very frustrating working with what is tiring out to be an incompetent doctor.

He has never confirmed that I have GCA. I told him all my symptoms, which to me indicate I have it. An MRI and CAT scan ruled out any tumors. The soreness has always been on the right side of my head. It’s near my ear going toward and sometime including my temple. Two days ago was it not only sore in that area, but it felt like a vein or my artery was swollen. Called the doctor, he had me down to 15 mg of prednisone and told me to double it saying

“I don’t know what to tell you, with these symptoms” WTH told him about sweating even on a cool day.. he pushes everything off to side affects of prednisone. Funny that when I increased the prednisone they went away. I read sweats can be part of GCA.

So after all this, I am at 30 mg of prednisone, I have slight pain to the touch in the same above described area. Should I be increasing the prednisone or stay at 30? If he calls me today, I am not willing to lower it as I don’t trust him. I have reached out to other doctors and I am trying to hook up with a specialist who deals with GCA.

thank yiu and have a great day.

[DorsetLady PMRGCAuk volunteer]

Is your incompetent doctor your GP (PCP) or a Rheumatologist..or what ?

I know in US you may see different specialism than we do in UK.

If your GP, then get a referral to a Rheumy - if you say whereabout in US you may get recommendations from other members... If Rheumy, then another one with a more open outlook! Or an ophthalmologist? or neurologist?

[Plains in reply to DorsetLady]

Rheumy said it. I went to a neurologist and an ophthalmologist. They were both wonderful. The Rheumy called me back today and AGREED yes!! With me tgat there is a strong possibility that it is GCA that I am experiencing. He wanted me to reduce quickly from 30 down, I said. No due respect but I sm not decreasing if my head still hurts to the touch. He backed off and said ok. He also is finally looking into an infusion once a mouth of Acumera ( spelling?) do our health care system Medicare will pay for it. Fingers crossed.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Actemra….and agree no quick tapering -you may be able to speed it up a bit once on new drug….but it’s not usually either/or…

Good luck

[Plains in reply to DorsetLady]

thank you

[PMRpro Ambassador in reply to Plains]

Don't let him stop the pred quickly even if you do get Actemra approved - you still need to taper the pred, in some people Actemra can take some months to really work.

[Plains in reply to PMRpro]

thank you

[Preacherball in reply to Plains]

I live in Minnesota and I am on both Actemra and prednisone. My understanding is that Medicare will pay for the infusions, since they take place in a hospital setting. Medicare does not cover the at-home weekly injecrions which are available and that I take. Precription drug coverage may cover a portion, but the injections are very expensive. Fortunately I receive this medication at no cost from the Gentech Foundation. You may want to look into that as an option, Everyone is different with this disease. I did a slow, 6 month taper off pred. while on Actemra, and still ended up with a flar after getting off prednisone. Then I did a much faster taper, still on Actemra, and again had a flare once off the pred. Tried a third time to get off pred., and quickly flared. So now I'm still on Actemra, slowly tapering to 5mg pred., where my doc wants me to stay until I see him again in Dec. to evaluate next steps. I feel fine at this time. So, each person has to see how they do and then be treated accordingly. At this point I'm not sure how long this will last. I was diagnosed with GCA in June of 2021. I'll decide next steps in December.

[PMRpro Ambassador in reply to Preacherball]

There is always the point that only half of GCA patients are able to get off pred altogether - there are 3 mechanisms underlying the inflammation in GCA and Actemra only works for one of them. If one or both of the other two are involved in your GCA, then you will need some pred but at a far lower dose ongoing.

[Dochaz in reply to PMRpro]

Have you a link to an explanation of the 3 mechanisms at work in GCA?

[Plains in reply to Dochaz]

no

[PMRpro Ambassador in reply to Dochaz]

ncbi.nlm.nih.gov/pmc/articl...

is a quite in-depth discussion of the current status of knowledge.

[Plains in reply to PMRpro]

thank you VERY much for this!

[Plains in reply to Preacherball]

yes, to do the injections at home would cost me 1,700 a month. My health care plan is great but the drug plan is separate and is not that good. Oct-Dec is when you can sign up for new plans so I will have to look into it. I would much rather fo the every two week shots at home than the infusion. It scares me getting all of it at one time.

I was fine to 3 mg if prednisone with no real body ache until the head temple thing started. I am on 30 now, I take it in the morning and no soreness in the side of my head. By morning it is a little tender. I will not go down from 30 until this goes away.

[Preacherball in reply to Plains]

My injections of Actemra are once a week. I receive them at no cost from the Genentech Foundation, gene.com/patients/patient-f... My doctor at the U. of Mn. knew of this resource and one of his staff did the application for me. Most people on medicare qualify as we are retired and our annual incomes are now lower. So you might want to look into it.

Having said that, as PMRpro notes, Actemra is not a magic drug that simply replaces prednisone. In my case, all three times I went off pred. completely, I flared, that is, my original GCA symptoms returned. The first time I had stopped Actemra as well, do to supply chain issues. For flares 2 and 3, which were close together, I was still on Actemra. So it may well be I'll have to be on a low dose of pred. to avoid future flares

[Plains in reply to Preacherball]

thank you so much for this information. I will have to see if I qualify.

[Preacherball in reply to Plains]

Hope so. Good luck!

[Devoid]

Did the scan show inflammation? And we’re you on medication when you had the scan?

[Plains in reply to Devoid]

no they did not mention anything. My markers were high thou

[Miacaro45]

Why haven’t you had a biopsy of your temporal artery?

[Plains in reply to Miacaro45]

no they told me since I was in prednisone it would not show anything

[PMRpro Ambassador in reply to Plains]

Depends how soon it is done - but it isn't 100% reliable anyway

[pmac22 in reply to Plains]

I had been on 80mg of prednisone for more than 2 weeks and my biopsy done by a neuro opthamologist was positive.

[montebello]

Same thing happened to me here in the states, until i called my ophthalmologist. Althougj he didnt suspect GCA strongly, he said a biopsy might rule it out. I had the biopsy done on THANK GOODNESS I did. Turned out positive. Was put on 60 mg PRED immediately and headache went away overnight.

But i had nit been on PRED until the biopsy so i don't know how effective it'd be for you now.

[PMRpro Ambassador in reply to montebello]

I'd say a biopsy MIGHT rule it IN - not out. A negative biopsy doesn't mean you don't have GCA for several reasons - the temporal artery is used because it is superficial and easy to get at and you can do fine without it, not because it always shows the giant cells they are looking for.

[Plains in reply to montebello]

my eye doctor has been great. Everything in his end looks fine. He mentioned the biopsy to me and told me a few things about the procedure and the risks to make sure they do it right. I went to a vascular surgeon who said she would not do it since I have been on prednisone so long.